Rushing Waiting and Worrying

Graham Blog 8/ 30/11

This is the first entry since early July and it is possibly more hopeful than the last.   At that point I was on hold for whole brain radiation… the only option left after it was determined that my brain had too many spots to get the microradiation, localized brain surgery.  The whole brain work started about the middle of July and ran for 15 days with weekends off.   I must say that this was and still is quite an experience as the symptoms keep coming.     Even now, a month after, I still am tired and have balance problems, weakness in my hands and difficulty concentrating except to the extent that I still have a lot I must get done while I can…( although it is hard to make a list).

Last week saw me getting the both an MRI and a Pet Scan.   These both had to wait until after the radiation effects (which are to kill cells) on my brain were stabilizing somewhat.  I got the Pet Scan readout yesterday.  It is a mixture of good and bad news.  The good is that two tumors and not increased in either size or “glow,”  that is, the intensity to which they are sucking up the sugar-laden Flourine 18 injected into me just before the test.  However, the third tumor has grown considerably. 

There are treatments for this including two new therapies just approved by the FDA, and this would be the next step and still may be depending on one thing.

Last week’s MRI is now being read and we get the results the day after Labor Day (Date? I used to have a calendar in my head, not now).   That MRI is being compared to one taken in early July.  The hope is that the new scan will show a lessening of tumor size and activity in the brain.  This would mean that we could go after the abdominal tumors again.   However, the brain trumps all other treatments.  If there is not a change in brain tumor activity then there is no need to work on the abdomen as one brain lesion can result in stroke ….the most common cause of death in melanoma…. and this can occur at any time…

So the past month was one of waiting and worrying…. And now we know about half of the worry and the shoe drops on the other half in a week.    I should not be worried about the XRay results and was confident, as I left yesterday’s session with Dr. Gailani that this would be ok.  Logically, the brain lesions were small back in Feb and appeared nearly the same in June and July…. why would that be different now, particularly with 15 days of XRay?  However, why would only one of three abdominal tumors grow in the past three months?   It is interesting how an overnight pounding of worries about this has led now to an overwhelming fear that something other than logical will occur and I know this anxiety will grow. 

Just as I lost my appetite for 5 days before yesterday’s appointment, my level of worry will heighten considerably…. It is always incredible that things like this have a way of lingering across long weekends.

So we will see.  If the brain tumors are growing then there is little to do… their growth would be largely unstoppable and the rate of growth and the brain areas they break into will determine how long I have.

That is not to say that I have not had some enormous experiences in the past two months.  My long time friend and masters student, now a professor in Oklahoma, came to SD to visit his mother, get out of the heat, and spend the better part of three weeks with me.   We talked science, did a little writing on an obscure subject, Bystrow’s Paradox, and went out to lunch and dinner frequently…. There is a shrimp dish on the lower left part of the Filippi’s (on India St) menu that is to die for… we went there twice… any locals,,,, I will go again.  Troy, who visit me in the Spring, is a good and supportive friend and we are very close and I hated to see him go, but now at least we have a “project”.  

However, a few days later saw the arrival Dan Abel, who was a doctoral student of both me and UCSD Cardiologist Ralph Shabetai.  Dan and then Lai, worked on the function of the shark pericardium (and revolutionized thinking about the shark’s filling cycle and about how an animal without a sympathetic heart innervation goes about elevating its cardiac output on a moment’s notice.)  I can provide more on this if you want.  Dan (a professor at Coastal Carolina College in South Carolina) and I had a really good time talking about his time with me and Ralph… and I told Dan a great deal about my early days at Scripps as student and then faculty and the great interim times at STRI in Panama… and a brief stint at SDSU.  Funny how the day we left SD to drive to Panama… yes, drive, I told Rosemarie that no matter what there was no way we would ever live or work in SD again, as I had degrees from SDSU and UCSD.  But that turned out not to be the case.

Sadly, Ralph passed away last October.  However, Lai, Dan, and I went to see his widow, Estelle and had a good visit remembering Ralph, who became a “fixture” in my laboratory for several years.  He taught us three a greal deal and trained us three in the ways of cardiology.  Indeed, Lai has made a career as a Physiologist at the VA and Ralph had a mystique among colleagues because of his “shark work” at Scripps.

Dan and I did take in the El Greco-Dali art show at the SDMA…. I, a struggling artist, went to be inspired and I just hoped Dan would tolerate me for an hour.  However, we had a wonderful guide and at the end of the hour Dan said this was “frosting.”

Dan’s departure was hard because it left me with things to do and worry about.  In preparing for the worst I prepared a list of stuff to do at home and at work and am moving along that.  I found there was a segment of the XRay treatment that required a lot of sleeping but was interspersed with intervals of lucid (so I judged) insight into research and effective writing).  There are about a dozen writing projects that need to be done and about 25 at home tasks…. The good news about the at home tasks is a big list of grand kid helping me…. That is fun.

So, I am rushing into necessary projects, however, in the light of worrying about things out of my control and about which the waiting is almost over.

Thanks to all of you for your support of my family and me.